The detection of autism spectrum disorder (ASD) in older adults in Dutch (specialised)
mental health care is improving, but underdiagnosis remains. Older adults with ASD
experience a low quality of life (QoL) and a high rate of psychopathology across the life
span and into old age. Additionally, Dutch and international treatment guidelines
advocate psychoeducation (PE) as the first intervention after patients have been
diagnosed with ASD. However, as PE for older patients with ASD is hardly available in the
Netherlands, access to PE is severely limited for these older adults. Hence, it is
important to improve detection and diagnosis of ASD and increase the availability of PE
for older adults. The hypotheses of this study are 1) that detection and diagnosis of ASD
in older adults will significantly increase following training of professionals and 2)
that delivering an adapted and improved PE program for older adults will result in more
knowledge and recognition of ASD, a better acceptance of the diagnosis, improved coping
with ASD, improved resilience and comorbid general psychological distress, and ultimately
in higher quality of life, compared to those patients with ASD that receive no PE.
The aim of this study on the one hand is to gain insight into: 1) the effects of
providing training and education to mental health care providers in detection and
diagnosis of ASD in older adults, with the expectation that this contributes to an
increase in the number and proportion of ASD diagnoses in older adults in the
Netherlands; 2) the effects of a PE program for older adults with ASD in terms of
knowledge and recognition of ASD and traits, a better acceptance of the diagnosis,
improved coping with ASD, improved resilience and comorbid general psychological distress
- and ultimately higher quality of life; and 3) the experiences of older adults with ASD
following the PE program.
Study design: The effects of training and education in detection and diagnosis of ASD in
older adults, and the effects of the PE program will be evaluated in a Stepped Wedge
Trial Design (SWTD), with the intervention sequentially rolled-out in ten (specialised)
mental healthcare organisations. Furthermore, a pre-post design will be used to compare
the situation before the roll-out period with the situation after the roll-out period in
terms of diagnosis and individual outcomes such as knowledge regarding ASD. Qualitative
measures will be used to assess the experiences of older adults with ASD who participated
in the PE program.
Study population: Older adults - aged 60 and over diagnosed with ASD no longer than 12
months before the start of the intervention by a multidisciplinary team according to the
Dutch multidisciplinary guidelines, as confirmed by the DSM-5 (Diagnostic and Statistical
Manual of Mental Disorders) interview for ASD, or the Netherlands Interview for Diagnosis
of ASD in adults (NIDA) as well as a proxy (an individual who provides reports on behalf
of, or about, a study participant).
The intervention consists of education in detection and diagnosis of ASD in older adults
for mental health professionals and of an adapted PE program for older adults with a
recent diagnosis of ASD. The PE program consists of seven, two hour group meetings on a
weekly basis.
Primary study parameter concerns clinical outcomes measuring effects of the
psycho-education course in terms of quality of life, acceptance of the diagnosis,
knowledge of ASD, recognition of ASD traits, coping with ASD, quantitative autistic
traits, resilience, and comorbid psychological distress. Quality of life is assessed by
the MHQoL-7 (Mental Health Quality of Life Questionnaire). Acceptance of the diagnosis,
knowledge and coping with ASD are assessed with use of the Questionnaire Knowledge,
Recognition and Acceptance of Autism Diagnosis (VKHAA). Acceptance of ASD (-diagnosis) is
further assessed through the Acceptance Questionnaire (AQ). Autistic traits are assessed
through the Social Responsiveness Scale-Adults (SRS-A). Comorbid psychological distress
is assessed by the Brief Symptom Inventory (BSI). All these assessments are performed (1)
at baseline (following diagnosis and informed consent); (2) before the patient starts
with PE (on average three months after baseline; participants in the control group will
receive this three months after baseline; (3) after the PE (on average two months after
the start of the PE program; participants in the control group will receive this
measurement 6 months after baseline); (4) at 9-months follow-up (nine months after second
measurement). A proxy, chosen by the study participant, will additionally inform on
acceptance, knowledge, recognition, coping and ASD traits through measurements on the
VKHAA for informants (VKHAA-N) and SRS-A for informants (SRS-A-N) at two moments that
overlap with measurements 2 and 3 of study participants.
Secondary study parameters is the number and proportion of ASD diagnoses in the
participating centres (collected from the information and registration systems of the
mental health care centres) from one year before, during the project, and at one year
follow-up.
For patients, benefits will be considerable as they will receive a PE program that is
recommended by the Dutch multidisciplinary guideline for ASD in adults, and although
being the recommended first intervention by treatment guidelines, is not provided to them
momentarily. The benefits account for patients who provide informed consent to
participate in the research and patients who do not give their consent, since the same
treatment will be available for both. The investigators consider the burden of
participating in the research, which consists of filling out questionnaires and inviting
a proxy of their choice to fill out two of the same questionnaires, to be limited.
Firstly, because this will be done in the context of treatment that fits the recommended
first intervention by treatment guidelines and thus does not provide an extra mental
burden. Moreover, the time needed to fill out these questionnaires is limited:
approximately 40 to 60 minutes per measurement point, and there are no indications that
risks are involved with regard to the topics of these questionnaires; specifically in a
similar study by the study's research group, no adverse events or risks were observed.
Additional potential benefits exist in the form of increased detection and diagnosis of
ASD in older adults across participating organisations, while the burden of participating
in the study hardly exceeds time and effort spent in diagnostic efforts as usual, yet
lightens efforts spent on informing patients with an ASD diagnosis as this can be done in
a group format rather than on an individual basis. The only extra effort is limited to
informing patients about the study with verbal and written information.